How dactinomycin is given

You usually have dactinomycin in the chemotherapy day unit or during a stay in hospital.

A chemotherapy nurse will give it to you. You may have it with other chemotherapy drugs.

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention doctor or nurse in this information.

Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is okay for you to have chemotherapy.

You will also see a doctor or nurse before you have chemotherapy. They will ask you about how you have been. If your blood results are alright on the day of your treatment, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.

Before giving you chemotherapy, your nurse will give you anti-sickness (anti-emetic) drugs as an injection into a vein. You will have these drugs, and the chemotherapy, through one of the following:

a short, thin tube put into a vein in your arm or hand (cannula)

a fine tube that goes under the skin of your chest and into a vein close by (central line)

a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).

When the chemotherapy is being given

Some people might have the following side effects while they are having the chemotherapy:

Allergic reaction

Rarely, dactinomycin may cause an allergic reaction while it’s being given. Your nurse will check you for this. If you have a reaction, they will treat it quickly.

Signs of a reaction can include:

a rash

feeling itchy

feeling flushed or short of breath

swelling of your face or lips

feeling dizzy

having pain in your tummy, back or chest

feeling unwell.

Tell your nurse straight away if you have any of these symptoms.

The drug leaks outside the vein

If this happens when you’re having dactinomycin it can damage the tissue around the vein.

This is called extravasation. Tell the nurse straight away if you have any stinging, pain, redness or swelling around the vein. Extravasation is not common but if it happens it’s important that it’s dealt with quickly.

If you get any of these symptoms after you get home, contact the doctor or nurse straight away on the number they gave you.

Your course of chemotherapy

You have chemotherapy as a course of several sessions (or cycles) of treatment over a few months. The length of your treatment and the number of cycles will depend on your type of cancer. Your doctor or nurse will tell you more about this and the number of cycles you are likely to have.

Going home

Before you go home, the nurse or pharmacist will give you anti-sickness (anti-emetic) drugs to take. Take all your tablets exactly as they have explained to you.

Possible side effects of dactinomycin

We explain the most common side effects of dactinomycin here. But we don’t include all the rare ones that are unlikely to affect you.

You may get some of the side effects we mention but you are very unlikely to get all of them. If you are having other chemotherapy drugs as well, you may have some side effects that we don’t list here. Always tell your doctor or nurse about the side effects you have. Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This means they will be more likely to work better for you.

Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.

Serious and life-threatening side effects

Sometimes cancer drugs can result in very serious side effects, which rarely may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.

More information about this drug

We’re not able to list every side effect for this treatment here, particularly the rarer ones. For more detailed information, you can visit the electronic Medicines Compendium (eMC) at www.medicines.org.uk

Common side effects of dactinomycin

Risk of infection

Chemotherapy can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. When the number of white blood cells is low, it’s called neutropenia. Your white blood cells start to reduce seven days after treatment and are usually at their lowest 10–14 days after.

Contact the hospital straight away on the contact number you’ve been given if:

your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team

you suddenly feel unwell, even with a normal temperature

you have any symptoms of an infection such as a cold, feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.

The number of white blood cells usually increases steadily and returns to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cells are still low, your doctor may delay your treatment for a short time.

Bruising and bleeding

Dactinomycin can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding you can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets.

Anaemia (low number of red blood cells)

Dactinomycin can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless.

Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells (known as a blood transfusion).

Feeling sick

This may happen during the first few hours after treatment. Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. It’s easier to prevent sickness than to treat it after it has started.

If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti-sickness drug to one that works better for you.

Some anti-sickness drugs can make you constipated. Tell your doctor or nurse if this is a problem.

Loss of appetite

You may lose your appetite during your treatment. If you can’t face big meals, try to eat small, frequent meals or snacks instead of three meals a day. Don’t worry if you don’t eat much for a day or two.

If your appetite doesn’t improve after a few days, let your nurse or dietitian know. They can give you advice on getting more calories and protein in your diet. They may give you food supplements or meal replacement drinks to try. Your doctor can prescribe some of these and you can buy them from chemists.

Diarrhoea

Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea.

Sore mouth

Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth or dentures every morning, evening and after meals using a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.

Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.

Hair loss

Your hair will thin or you may lose all the hair from your head. This usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back after chemotherapy ends. It is important to cover your head to protect your scalp when you are out in the sun. Your nurse can give you advice about coping with hair loss.

Skin changes

Chemotherapy may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. Dactinomycin can cause a rash, which may be itchy. If you’ve had radiotherapy recently or in the past, the area that was treated may become red or sore.

Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

Tiredness

Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery.

Less common side effects of dactinomycin

Taste changes

You may get a bitter or metallic taste in your mouth or find that food tastes different. This should go away when your treatment finishes. Try using herbs and spices (unless you have a sore mouth or ulcers) or strong-flavoured sauces to give your food more flavour. Sucking boiled sweets can sometimes help get rid of a bitter or metallic taste. Your nurse can give you more advice.

Changes in the way the liver works

Dactinomycin may affect how your liver works. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your liver is working.

Difficulty swallowing

Chemotherapy can affect the cells in the lining of the throat, which can make it painful to chew or swallow.

Other possible side effects of dactinomycin

Other information about dactinomycin

Blood clot risk

Cancer increases the chance of a blood clot (thrombosis) and chemotherapy can add to this.

A clot can cause symptoms such as pain, redness and swelling in a leg, breathlessness and chest pain. Contact your doctor straight away if you have any of these symptoms. A blood clot is serious but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.

Other medicines

Some medicines can interact with chemotherapy or be harmful when you are having chemotherapy. This includes medicines you can buy in a shop or chemist. Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.

Fertility

Dactinomycin can affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor before treatment starts.

Contraception

Your doctor will advise you not to become pregnant or father a child during treatment. This is because the drugs may harm a developing baby. It’s important to use effective contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.

Sex

If you have sex within the first couple of days of having chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.

Changes to your periods

Chemotherapy can sometimes stop the ovaries working. You may not get a period every month and they may eventually stop. In some women this is temporary, but for others it is permanent and they start the menopause.

Breastfeeding

Women are advised not to breastfeed during treatment and for a few months after. This is in case there is chemotherapy in their breast milk.

Medical and dental treatment

If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are having chemotherapy. Give them contact details of your cancer doctor.

Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist you are having chemotherapy.

Thanks

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